Happy Autism AWARENESS Day! Yes, that’s right I said Awareness!
April 2, 2013
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Now Reading: Happy Autism AWARENESS Day! Yes, that’s right I said Awareness!
April 2, 2013
(originally written & published on April 2, 2013 when my son was 10 years old & I was still married:-))
Today is World Autism Awareness Day. But as usual, within our autism community people are having debates about whether it should be “awareness” or “acceptance” or “equality” day.
And, as usual, within our autism community some people are shouting & fighting.
Perfect example, I posted an innocent picture on my Autism Daddy Facebook Page of some blue cookies my wife sent in for the teachers & students in my autistic son’s class with the caption, “The wife made these blue cookies and sent them in to the king’s school today to help celebrate youknowwhat day.”
And this was one of the comments:
What’s with all the “awareness”? With 1 in 50 numbers and crazy theories coming out (like old grandfathers, abused moms, too much tv, etc.), I think the “awareness” part is covered. Sorry, but what good are cookies at this point? Are the teachers unaware? Will this increase action to find the REAL cause? I’m stumped every year with this need for “awareness.”
Now, my wife didn’t do this to change the world…or to make the teachers more aware. She did this cuz she likes to bake and she likes to celebrate and be a part of things.
She dressed my son in red & made red cupcakes for Valentine’s Day.
She dressed him in green and made green cookies for St Patty’s Day (and we are not even Irish).
And today she dressed him in blue and made blue cookies for Autism Awareness Day.
And that’s probably about all we will do to “celebrate” the day and/or to make people more “aware”.
But for the people that say the outside world should be “aware” by now. You’re wrong. You’re living in your autism bubble.
To you and to me, it seems that autism is in the news EVERY FREAKING DAY. But that’s because we are seeking out that news.
Admit it, you have a google news alert set to feed you all the autism news of the day.
Or most of your friends on FB are also in the autism trenches so you’re FB newsfeed is filled with autism stories EVERY day.
Admit it you are obsessed with reading blogs written by autism moms & especially dads. 🙂
So, to you, it seems like the world is drowning in autism awareness.
But it’s not true. You’re only reading about autism if you want to read about autism.
If you’re a typical parent, and you watch the evening news every night, check out CNN.com a few times a week, and read your local newspaper every day you’re probably not that aware of autism.
Think about the types of & the frequency of autism stories that hit those sources on a weekly basis.
They are few and far between.
And the types of autism stories that do make the mainstream media usually fall into 3 categories…
1) feel good stories about typical people being nice to autistic kids like this new one from ABC News, “Autistic Girl’s ‘BrokenCheeseburger’ Story Goes Viral”
2) autistic kids doing great & surprising things like this old one from CBS. (this one has been spread around the web for over 3 years now) “Autistic Teen’s Hoop Dreams Come True”
3) As the person commented above, theories about causes or links to autism, like this one from a few weeks back, “AUTISM: UCLA study finds air pollution correlation”
And I’m not against any of those types of news stories. They are all valid and they all show a side of autism. But seeing maybe 5-6 stories like this a month doesn’t make you “autism aware” in my mind.
So I think having a day and a month where we try to be upfront with the rest of the world, and be even more present in the mainstream media is not a bad thing.
Autism Awareness Day & Month is really not for us. It’s not for us living in the autism trenches.
The Day & Month are for the rest of the world…to help them be more “aware”.
Having autism awareness day & month just forces the mainstream media to throw a few more autism stories on the air. And hopefully one or two will be different, and not fall into the 3 categories above. And hopefully one or two will get into the “1 in 50” number, make people more “aware” of the epidemic we have on our hands.
Again, I know, I know, you’re thinking, “It’s freaking 1 in freaking 50! How can they not be aware by now!”
Trust me, they are not.
And if I wasn’t an autism parent, I would not be aware. I would not be setting a google news alert to feed me all autism news stories. I wouldn’t be reading autism parent blogs. If I was a typical parent, I’d be digesting the autism news that I happen to stumble across while I’m looking for the sports section of the paper.
I wrote this in a previous blog post called “Autism Parents: How much do you expect peopleto deal with? How much is too much?”
I think if I was a “typical” dad and went into a family member’s autism home (or had them over my home) I would be extremely concerned & compassionate & would bend over backwards to make them feel comfortable and make any accommodations to make things easier for them…but once they left, I’d probably be “out of sight out of mind”
I’d get bogged down in my own problems & issues, which to the autism parents would seem absolutely minuscule. This is what happens to most family & friends I think…because when they are living in their own “shit”, whatever it may be…(my kid is failing spelling, my kid is 3 and not potty trained, my kid stutters a little) and it seems like a HUGE issue in their lives.
It IS a HUGE issue in their lives.
And their problems, as minuscule as they may be to us asd parents consumes all of their energy and brain power… and you are your situation are the furthest things from their minds…until they see you again… and see what your dealing with… and they think about how stressed they are over stupid stuff… and that’s when they say “I don’t know how you do it…”
Then they go home and forget all about and go back to their HUGE minuscule problems…
But that’s just life. There’s not much we can do about that.
Maybe as autism parents, we do expect way too much from the outside world. They are bogged down with what they feel are their own HUGE problems… and don’t think about autism until they see a news story about autism… or in April when their Facebook newsfeeds get inundated with autism awareness month crap… 🙂 Then they say “how do they do it” and then they move on with their huge problems…
And again… that’s just life. There’s not much we can do about that.
And I stand by what I wrote.
There really is not much we can do about that. That’s just life.
But for one month a year, and especially on one day a year, we can try to force some awareness down the typical world’s throats. So they SLOWLY become more & more “aware” of the impending epidemic of autistic kids growing up and leaving the school system, and having nothing to do and nowhere to go. (that’s a whole other blog post for a whole ‘nother day)
Now I know we shouldn’t have to force it down their throats, but we do. So for one month a year, let’s try to get all the stories out there. The high functioning stories & the low functioning stories. The medical stories & the insurance stories. The political stories. The poop stories. The inspirational stories. The good, the bad, and the ugly. Let’s get it all out there…and see what sticks and what resonates with the mainstream media and the masses.
That’s all I got.
So Happy Autism Awareness Day!
Now excuse me while I enjoy one of my wife’s delicious blue cookies that I stole from the Tupperware before delivering to my son’s school…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).